Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade

I want to learn more about Remicade from others who are on it or who have tried it. My doc suggested it today because the Enbrel is not cutting it. Also, how often do you have to go to get the infusions?

Shari

Hi Shari,

If I remember correctly you are on a half dose of Enbrel due to the infection factor. I'm just questioning why your rheumy would want to put you on Remicade which stays in the body much longer.

best,
Klem

Klem:

You are right, but according to my doctor, the infections are minor and he is trying to control my disease a bit better.

I hope a wonder drug comes out soon or maybe I will get pregnant and go into remission-

Shari

Hi,
I have been on Remicade for about a year and a half. I get my infusions in the hospital and it takes a good 5 hours. Works great for me. ahhhhhhhhh

Do you know if 5 hours is an average time span for the infusion? This is the first I have heard of it taking so long, and have since been trying to find info. I will be starting Remicade shortly, pending the TB test results. 5 hours?!?!?!?

Hi Tracy,... and Welcome to KA from a fellow Ontarian!

Good to hear you will be able to see if Remicade can help your AS. I'm currently on Remicade, and my infusions take approximately 3.5 hrs in total. So far, my pain levels have been reduced drastically, although the fatigue factor still haunts me.

In what part of the province are you located? I live in the town of Markham (north east of TO.) but travel downtown to St. Mikes for infusions.

You've found the best place for meeting others with AS, so I hope you'll enjoy it here as much as I do! It's an addictive place.

Take care,
mig

Hi Shari,

My infusions are spaced out every 8 weeks. When you first start, they 'ramp' it up by doing an infusion 2 weeks after the initial, then 4 weeks later, and then finally up to 8 wks apart. This protocol may differ in some regions(?) but is fairly standard from what I hear.

Hope the transition helps you!
Hugs,

Thank you so much for the welcome! I am from Hamilton, just West of TO. Can't wait to start the Remicade, but am a little nervous. After reading through these threads, I have come to realize how lucky I was to be referred to the Rheumatoligist that I was,Dr. Kahlidi. After a suspected diagnosis from my GP, two visits to the Rheumatoligist, an X-ray and an MRI later, I am on my way to relief!! The only thing in my way was checking my benefits to see if I was covered, and the TB test (had first one this morning).

Thanks again

Wow, that is a great testimony to your doc that your diagnosis was so quick,... but to gain such quick access to the newest meds is incredible!!!!

We just recently heard from another Ont. member Kat (Inanna) who's also been given the green light for a biologic. Makes me wonder if there's been a new directive to make these meds more readily available for ASer's here? If so, that is very good news!

I was nervous too and still am a tiny wee bit. I've been on it for 6 months already (wow, how time flies) and it's not all that scary and the infusion itself is fairly boring. Don't forget to bring along some good reading material to help pass the time. Nurses will monitor your blood pressure, temperature, and pulse throughout on the chance you may have an allergic/adverse reaction. I did have a slight problem early on, but all my good buddies here told me to ask for benadryl right before the infusion, (and my doc agreed it was a good plan) which has helped take away any ill feelings. Due to the Benadryl I can't drive myself to these appts, which is a drag, since it makes me sleepy.

It is so nice to know that you will have a really good chance of avoiding the fusion and the other problems that AS makes us suffer through.

Let us know how it goes, and search through this forum if you'd like to read up more, but keep in mind that most folks are more apt to post about the negative experiences they run into and have questions about, so don't let it get to you.

If you keep thinking up new questions - then just keep posting and there will likely be someone who has a good idea of the answer. Or feel free to send me a private message if you think I can help.

Hugs and best of luck, Tracy!

Hi Tracy

I think the duration of the Remicade infusions may vary from country to country and perhaps from hospital to hospital. I live in Sweden and when I started on Remicade two years ago, the infusion ( 200 mg ) took 2hrs plus topping off with a saline drip for one hour. Then they changed the procedure and didn't do the saline anymore. After a year without any side-effects or allergic reactions, they sped up the infusion, so now it takes 45 min to 1 hour. I almost miss when it took 3 hrs or more. It was rather relaxing, reading a good book.

Hope you'll get the same effect from Remicade as I have. If so, you will think it is a miracle. However, not everyone respond to Remicade as well as I have.

take care

/Mattias
PS. Almost forgot. Welcome to KA!